Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

09 Nov 2025

This Year Feels Different


I really cannot explain it. I can normally feel what time of year it is as Thanksgiving approaches. It is a time that I normally dread. For whatever reason, this year feels different.

Keep in mind, the details that I am going to write, are as fresh and clear as when they occurred, back in November of 1988. I was twenty-two years old. I had a good job working for an appliance parts distributor. I was engaged to be married. Everything was going great. And then it wasn’t.

I was sitting at my desk, when I had an itch behind my left ear. As I scratched it, I realized that there was a lump at the base of my skull where I was scratching. I saw my family doctor who felt I had a cold, and this was just a swollen lymph node. After a course of medicine, the node went down in size, but then I developed pain which led me to another doctor. And it was this doctor who put me down a path that would change my life forever, that is, once he could convince me, that his hunch was correct. While today I consider myself a good advocate for my health, back in 1988 I was my own worst enemy with as much denial as I threw at not just that doctor, but five more denials with doctors that followed. Six doctors in total, all in agreement, made the recommendation that I get that lymph node, now swollen back to its size when it was discovered, just might be cancer. All of the doctors from general practitioners to sports medicine to an oncologist (I had no idea what that was when I had my appointment), wanted the nodule biopsied, which I finally agreed to.

It was the Monday before Thanksgiving when I had the biopsy done. Bloodwork and x-rays showed nothing to this point, and I felt the doctors were also wrong, and the biopsy would confirm that. And that was the beginning of my disdain for this holiday period around Thanksgiving and Christmas. The biopsy revealed that I had cancer, Hodgkin’s Lymphoma. Definitely nothing to be thankful for.

I go into more details in my book. Today I want to go in a different direction with this post than what I have in years past. Like I said, this year is different for me.

It has been thirty-seven years since I was diagnosed with Hodgkin’s Lymphoma. I remember every conversation, procedure, treatment, side effect, and struggle. I remember every heartache of friends who “disappeared” rather than stay in touch with someone who had cancer. I remember the fights against discrimination and for health care. I remember being treated like I was not going to live even after I was told I was in remission. I remember every detail, vividly. This is what makes it so hard for me each year around this time, I have never forgotten what I have gone through. My story is not unique. So many have their own cancer story, many stories worse than I faced.

But this year is different, and with a purpose. Not considered a milestone or even a rounded number, for some reason, year thirty-seven, I have a different outlook (and I do not know why), and I have a message I want to share for anyone going through cancer, or regardless if in the early stages of remission, or in long term remission. Life is good after cancer.

One thing that a cancer patient is not told by their oncologist, and I really wish would be told, as mental health is just as important to beating cancer as the chemotherapy or radiation therapy, all a cancer patient wants to do is get through treatments, and then get back to their lives, picking up where they left off. The reality is, there is no going back to the life that was. And that is not necessarily a bad thing. Once finished with treatments, a cancer survivor begins their life anew, creating a “new” normal. In fact, I can say, I actually have begun several new normals throughout my survivorship. My point is, my life never returned to what it was and there are times that I miss that past life. But my life what it is now, is what it was meant to be, and as of right now, has been exactly what I wanted. And I definitely want more.

The fact that I have been blessed for four decades to witness the amazing progress in diagnostic and staging processes, and newer theraputics in the treatment of my cancer that everything that I went through, which is now obsolete or at best, rarely done anymore. I underwent brutal and invasive procedures such as the staging laparotomy and lymphangiogram and the bone marrow biopsy just for staging purposes. Oh how I wish we would have had the option of the PET scan back in 1988.

Or how about the option of the port for chemotherapy as opposed to being stabbed repeatedly trying to insert the IV needle into veins being destroyed from the toxic chemicals? I did not have that option. And today I am a nightmare for any tech trying to get blood from me as I have no working surface veins for blood draws or IV placement.

And then, there are the treatments. Even back in my day, the amount of radiation and the toxicity of the chemotherapy, it was believed could actually kill us. This was justified because without treatment, we would die anyway. But now medicine has figured out how to treat more, with less, less radiation and newer methods such as proton versus photon, and the elimination of many chemicals once respected as “the cure” but at the ultimate cost, to a standard regimen now used for decades, a lesser toxicity and providing similar results or better for remission.

So let’s talk about life after cancer, long after cancer since it rarely if ever gets any attention. I have accomplished so much in four decades. As I said, nothing like my life before cancer. I finally found a career. I bought my first house. I travelled all over the country and even travelled to the other side of the world to build my family with the adoption of my two daughters. I wrote a book about my life with and after cancer. I dabbled in local politics running for our local school board. And I had the best dog.

I never liked being referred to as a fighter or warrior. I never asked to be put into this position. I was literally thrown into it challenged to survive or die. I was not brave or courageous to go through all the procedures and treatments. I did what I needed to do just as I do today when I am faced with one of my late side effect issues. Each time something comes up, I have two choices, I can either sit back and let life just happen to me, no matter how bad, or I can make the decision to push back and fight. I am tired. I am exhausted and fatigued. I am in pain. But to quote the late great Tom Petty, “I won’t back down.” I make the decision every day, I want another day. I go to bed each night, not dwelling on the bad stuff, but preparing myself for what I need to do tomorrow. If I do not wake up, I will never know that things were not completed. But if I do wake up, then I have stuff to do.

If you want to know if someone can beat cancer, if you want to see what life can be like after cancer, much to the chagrin of many, I have been as public as I can be, sharing all aspects of my survivorship, hopefully providing the inspiration that it is intended to do. It is my hope, that whether you follow me on my blog here, or on TikTok, YouTube or wherever, if you have my book or have heard me give a speech on cancer survivorship, I hope that if anything really brings it on in, because as this survivorship number gets higher, it really is feeling different for me this year. And I am actually looking forward to this year’s holiday season without any reservation or fear.

Seriously, how could this journey have begun thirty-seven years ago? I don’t even think I look thirty-seven years old…do I?

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart and tagged , , , , , , , | Leave a comment
06 Nov 2025
1 Comment

A Regret? Really… Not Really


(photo via Central Bucks Now)

If there is one “rite of passage” for a teenager, it is earning the right to drive a car. I earned my license nearly forty-five years ago at the age of sixteen, and without an accident until my car was t-boned (my car hit from the side), I have never had a car accident. But, in the later teen years in my life, I lost three classmates, in three separate car accidents, while still in high school, or soon after.

As a parent, of all things watching my daughters grow up, my daughters in a car, alone or with others, was and still is my worst nightmare. Not for their lack of ability or skill, both have tried to get their license, gotten as far as obtaining their learning permits, but circumstances unintentionally have given me relief, cushion, or excuse, from going forward with earning an actual driver’s license. Am I sorry about that? Well… kind of, and kind of not.

The logic behind their lack of driving status is clear. With my divorce, being able to afford car insurance for both, a car payment for both, maintenance and gas for both, as they say, “money doesn’t grow on trees.” There was just no way to afford allowing them to drive. Then there was also the fact that both planned and do attend college in a major city, where driving is not an option, having to rely on public transportation such as trains, subways, and Uber/Lyft. And when you look at that, all are cheaper than using a driving license. To me, I expressed to them, that it made no sense to pay expenses for a car, likely only to be driven a handful of times, for four years. Financially it was throwing good money after bad. Car insurance alone would cost $10,000 or more while they are in college. There is no harm with them going for their license after graduation, and once they have decided where they are going to live, and if owning a personal vehicle is financially the right thing to do. To be clear, this only eliminates the worry of them driving and something bad happening, not them being in a car with someone else.

I receive newsfeeds from several areas that I have lived, and almost weekly, there is a tragedy involving a car accident involving young drivers. Most recently, an accident involving four teenagers, with only one survivor. Details are still under investigation, but only one thing has been made known, the driver was an unlicensed 15-year old (the legal age to drive in the state is 16), was driving the car when it lost control into the path of an oncoming vehicle. There were three other passengers in the car ages, 14, 16, and 18. Three of the children in the car were killed, the fourteen year old’s condition not currently stated.

Besides the fact that the 15 year-old was driving illegally, there are laws in the state restricting passengers in a car when the driver is of such a young age. And as most adult drivers know, there is a lot going on in a car with friends besides paying attention to the road. Responses to the accident from observers range from empathy to shock, criticism and just plain cruelty. And just as with others, before a full conversation can be had on this accident, another will occur taking attention away from this one. Bottom line, there are so many things wrong with this situation. This tragedy did not have to happen. And let’s not forget, the innocent driver who hit the car, killing three of its passengers all because of illegal and immature decisions.

There was an accident here where I live, involving a teenager who crashed his car into a tree, losing control of his car at a high rate of speed. Again, the outpouring of empathy was immense, but so too was the judgement from many about the type of expensive car, and the cause of the accident. And it would be the response from a family member that had me shaking my head, WTF!!!. The teenager was racing down a three-lane road at a high rate of speed, not accidently, but something he clearly did often. How did I know this? A response from a family member, “he loved racing his car. He died doing what he enjoyed.” Again, WTSF!!! How could a family member, or even the kid himself have such little value of life to make the decision to get into a literal killing machine, drive it recklessly on a public road, just because it is what they enjoyed doing?

We have driving laws, especially for teenage drivers, that take into consideration experience and maturity levels. But laws only work when they are followed. That means it falls on the parents to make sure their teens know and respect the laws of the road. What happens though when the parent is not in the car with their teenage driver? Nothing was said in the news report of the recent article with the fifteen year old driver, if either of the two older teenagers had a driver’s license? Whose decision was it that put the fifteen year old in the driver seat and why? Are the parents who are mourning being held accountable enough for a fatal decision they were not even present for?

It is a parent’s worst nightmare. And because of my own experience as a teenager with these kinds of tragedies, I know I have done all I can to at least reduce the likelihood of this happening with either of my daughters. Have I ruined a part of their lives by not allowing them to drive, or just inconvenience myself not having someone to run errands for me? They do not seem to have missed out on anything not having a license. And I know that both have been in cars with friends, though admittedly I find that out after the fact.

I have no doubt that at some point, my daughters will get their licenses. And when that happens, I know they will have a lot more maturity in them when they get behind the wheel. But it will take a lot more than that to let me allow them to drive where I live, where we have some of the worst and most aggressive driving, with a condition joked about not having gravity with daily accidents involving rollovers.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
04 Nov 2025

What Does Ai Have Against Cancer Survivors?


(image courtesy of SciTechDaily)

It was a simple and innocent enough question I entered. Given my personal status, and my knowledge, I thought for sure, asking Ai would give me at least a similar or more accurate response to my question. But might I actually know more than Ai? Or might I just have the one characteristic that Ai lacks, the ability to care about the impact of the question?

“What is the average lifespan of a Hodgkin’s Lymphoma survivor?” It is a simple enough question, and if you have followed “Paul’s Heart,” you know at least one Hodgkin’s survivor of at least 35 years. And you would think medicine and other advocacy groups would have some sort of statistic to reflect others like myself, and there are plenty more, at least a thousand more that I am personally aware of.

I do not chase after this statistic constantly. The last time I looked, still the only number when it came to cancer survival rates, was still being based on a 5-year average. Sure, it gets acknowledged that survivors of Hodgkin’s Lymphoma can live longer, but there still is not any kind of verfiable or concrete information, mainly because it has never been tracked. A patient hits the five year mark post treatment, and then gets released by their oncologist, in theory, never to be heard from again, alive or deceased.

So since medicine and society do not have any solid stance on my question, I put it to Ai. The response was based on twenty-one sources, including ASCO, City Of Hope, NIH, ACS, NCI, Blood Cancer United (formerly Leukemia And Lymphoma Association), Lymphoma Research Foundation, NHS, Cleveland Clinic, and more. “While there is no single “average lifespan” for a Hodgkin’s Lymphoma survivor, most patients have an excellent prognosis, with long-term survival rates approaching those of the general population” was the answer. I guess “general population” refers to those with no history of cancer. Ai also does not seem willing to commit to any kind of number, whether it be by years of survival, or by the percentage of those having long term survival. Ai does admit to several factors influencing survival from age of the patient, stage of the cancer, and of course, treatments administered. But I already knew that.

My Ai search went on then, with the usual “survival measured in five-year and ten-year” relative survival rates (an improvement from just five-year), based on data from 2015 to 2021. Again, keep in mind, data was not kept on those of us treated in the 20th century and at least the first decade of the 21st century. Ai does admit that many live decades beyond their diagnosis, and that is because of documention by the medical community of survivors like myself, but there still are no solid numbers other than what has been documented over the last ten years. And I know there are other Hodgkin’s survivors out there in the world.

Age is recognized as one of the factors that impact survivorship. It took a long time to give myself credit for survivorship longevity as long as I have, but I am still so inspired by those in their 40, 50, and 60 years of survivorship. And if you are saying “WOW!”, you bet WOW!!!. These survivors were more likely diagnosed in their early childhood or teen years. But that does not mean that those diagnosed as adults cannot have longevity. It just means that the trauma to their body is affected differently by the already aged and susceptible issues of an older human. I was 22 years old when I was diagnosed, turning 60 at the end of this year. And I know many who were diagnosed in their 30’s and 40’s, now in their 70’s. But why isn’t this information coming up in my searches, even with the assistance of Ai?

The other major factor recognized by AI impacting survivorship, treatment complications. For those of us treated prior to the mid to late 1990’s, it was possible we were not even expected to survive the toxicity of the treatments, let alone worry about survivorship. But as medicine continued to advance and find better and somewhat safer treatments, its toxicity still exists today, however with increased survivorship numbers.

Here is the problem, and Ai does not even seem to have a grip on this situation. What happens to those survivors who develop treatment-related complications such as secondary cancers, cardiovascular disease, pulmonary disease, as well as other issues? Ai’s answer for this is less than a hundred words, lifestyle and medical surveillance. And I would bet donuts to dollars, being monitored following the five-year mark is still not mainstream advice to Hodgkin’s survivors.

Science and medicine knows this monitoring is crucial to survivorship. Well at least those that treat survivors like me, impacted by our treatments. Thirty-five years out, my treatments have had a lifetime impact on my heart, my carotid arteries, my lungs, my thyroid, my esophagus, the muscles of my upper torso, my spine, my pancreas, fertility, and of course dealing with several emotional issues, one being survivor’s guilt. So I am quite lucky, I have been monitored since 2009 following the discovery of these late effects, but still, this was thirteen years after my “five-year graduation” from cancer, unsurveilled, and clearly lucky, with the first issue I developed was caught just as I was about to have a fatal heart attack. Had I been followed up sooner, the situation would not have been as dire.

And there are many others, as I have said, at least more than a thousand that I personally know who did not have the monitoring until it was either near too late or just oncoming. So does everyone develop these issues? According to Ai and its resources, that number is “not definitively established.” And figuring this out is as difficult for humans as it is for Ai. With evolving treatments, varying studies, and longer latency periods, a bigger factor impacting this is human, and that is the ability to connect the health history of a Hodgkin’s survivor to any particular issue that has come up. But without a Hodgkin’s patient being told about later risks, and many still are not, survivors simply go on with their life, after Hodgkin’s, never giving it a second thought. And unless you are dealing with a known issue, you do not seek out that help, and that can erroneously affect statistics, diagnosis that make no sense for demographics, like when I was diagnosed with a widow maker heart blockage at the age of 42, due to my radiation treatments. Even the operating room was shocked to see someone “so young”. Medicine and science knows to look out for these things, yet it is not common recommendations to follow up lifetime with every cancer survivor for these types of issues.

And then there are those survivors who will simply bury their heads in the sand, like ostriches, ignoring the potential for problems or pretending it does not exist. After all, if you cannot see it, does it really matter? All a cancer patient wants is to live a long life after cancer, without cancer. Why doesn’t society and medicine recognize and more importantly celebrate when survivorship does happen? I am talking going beyond “ringing the bell” at the completion of treatment(which I never got to ring back in 1990 as this was not a thing back then). Our society frequently announces those who are diagnosed or battling cancer, and of course there are those that do not survive. But think about it, how many “celebrities” can you name who have survived cancer, let alone those personally in your life? Why do we not celebrate and recognize those survivors, giving inspiration to those newly diagnosed or currently in treatment, looking for support that there is so much to look forward to?

When I was diagnosed in 1988 at the age of 22, besides the chances of me beating cancer, my next question was how long I could expect to live after that? Would I live a long life? I have been writing “Paul’s Heart” nearly fifteen years, so you have seen all of my milestones and achievements so far in my survivorship. And I still have many more that I want to reach. But I am just one survivor. I love being able to share stories of other survivors and I have done this many times on this page. If you would like to share your story of survivorship, I would like to post it here, so that others could see more than just one survivor story.

Even if medicine and science never catch up, I have hopes that maybe Ai will.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart and tagged , , , | Leave a comment

Post Navigation

← Older Entries
Newer Entries →